A day in the life…

Sometimes I get to the end of the day and feel like I have moved like 1000 miles that day. When I think about the day… I realize it was kind of 1000 miles. From wake up to plop down I laugh at the things that were in that day… in order to move 1000ish miles in a day one must have a good sense of humor for the things that just don’t go as planned. I find that the only way to sum it up at the end of the day is my thought… a day in the life. No one else is picked for this set of days, just me. I find myself laughing often as I am plopped down, recalling the day. My girls are funny (and terds)… they are often pulled into this crazy life and days. Those chicks can ride the rollercoaster with me, they are awesome nappers at Maddie’s Spot… see we are balanced like that.

A day in the life of me is chock full of change it ups and plan B’s. The other morning in all the normal craziness of drop offs and errands and meetings, Lucy and I got into the car and we almost puked- it smelled like a dead carcass (Lucy’s words). We searched for the stink, and found it- all wrapped in a Hannaford bag. Four days of cooking in a car and that pork roast smelled way more dead than it was when I purchased it. Comically I had to drive around all day and leave my windows down… for fear that the smell had infused in the car, and dinner plans were changed. I always buy pork roasts only to remember, when I get home, that my crock pot burnt up (cheers to plan B).

The mornings start out with a buncha reminders… grab your viola, feed the rats, let spark out, put the banana piece in the Hissing Cockroaches, Lucy did you feed your fish?, grab a hair thing there is lice at school, Amelia that needs leggings, Lucy move it- we don’t run on Lucy time… and so on and so on. Mornings are hectic to say the least. We are lucky if we make it to the bus stops on time…

Then my day gets to its normal crazy… the kind that requires a list to check off and a planned circle of driving so it is most efficient. Go to my bank, get gas, go to YMCA (try to get a good workout in), post office, pick up or drop off fingerprint necklaces, head to Albany Med (try to find my way and wish I had scrubs and Starbucks and a job there)… then maybe zip to Saugerties or Latham or wherever to drop off or meet with a family… then BOOM try to catch the busses (plan B pops in here sometimes). Then the afternoon of homework, snacking just right, making dinner, baseball… then couch. PLOP.

In the midst of that are tiny adventures, lots of mix ups, stops at the store for toilet paper and allergy meds… and quick naps at Madeline’s Spot.

The world thinks of vacation as Disney and exciting vacations with real preset up plans… I think of vacation as a week of sitting on Lake Ontario watching my girls swim, kayaking, cooking, bon fires and sunsets. I love doing something or doing nothing. I hate having preplanned things… I want to throw a hike in and visit my family. Vacation is a slowdown, not a speed up. I laugh sometimes when I think about the fact that my life and my girl’s life is Disney World- we go 1000 miles in a day sometimes. We live Disney, so when I take a break I want slow… I want to do something closer to 20 miles in a day.

A day in my life is like a marathon most days… but it’s my way. I am working to find more moments to be slower, but I don’t know if it is my way. I love this just the way it is… travelling, sharing, connecting, moving, living, smiling, crying, supporting and getting those 1000 miles into my day before I PLOP. After all it is just a day in the life of me…

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… and today she is 7.

Another year has gone by, another milestone reached. Today is May 20, 2016 the 7th anniversary of first seeing, snuggling and meeting my Lucy Bean. It was a long day but ended quite well, with a 7 pound perfect baby girl, the day we got to finally know God made us a whole set of girls. My girls all met in their polka dot dresses and Madeline was so proud to be a big sister to all. I remember all of those chicks on my lap… I was scared to go home but wanted to leave. Bringing a baby home to a family of young chicks is an adventure to say the least…

Seven years have passed… full of amazing, hard, funny, memorable, broken, angry, silly… days I wanted to run and days I wish we could return to. I wouldn’t change a thing… I hope the girls feel the same when they are grown.

Lucy is Lucy, she is herself all around. She enjoys space but is afraid of the dark and sneaks in for snuggles. She runs away from kisses or things that might embarrass her, but she’ll give me a crazy big kiss in the middle of the hall another day. She succeeds at things she sees as interesting or important, God forbid you try to make her read a book about friendship or shopping. She much prefers dogs to people, or any pet for that matter. Lucy is a plethora of knowledge about animals, facts and insects. That chick collects dead bugs and pets… strange plants, pretty much anything different. As a family our collection is a fish, a miniature dachshund, 2 venus flytraps, 2 fancy rats and 2 Madagascar Hissing Cockroaches joined the clan this morning. She makes me laugh and smile about 1,000 times a day. My favorite thing to see is her playing baseball in that farm field. She might be in the outfield and practicing pitching or playing in the sand… but when she is up to bat I love to see her little knees bent and butt out… bat up in the air ready to swing. Sometimes she hits home plate and I just want to nibble her cheeks… that kid.

So today was a good day. Cupcakes and treats and birthday presents, Lucy enjoyed being a super special Lucy. We had dinner with Matt, which was super weird, but Lucy requested. We are good parents and grow ups so Lucy got her wish. After celebrating Lucy’s big day with their dad we headed to the playground and home for a movie night. As per her request she got a big bowl of popcorn with salt and melted butter (not the healthy stuff). So here we are sitting and watching Clue eating buttery popcorn… waiting until 10:46pm so Lucy can finally be 7… for her sister insists she is totally still 6.

Happy Birthday Lucy Marie Musto my ball player and silly collector of weird things… I love you (and I know you love me more than all the universes and 100 trips around Mars) but I love you more, it is my job. Thank you for being you, just the you that you are.

Little People Change BIG Things…

Once and a while in our crazy and busy worlds really special things happen and remind us that little people change BIG things. Madeline will forever be my little kindergartener… but she continues to change BIG things. She sends strength and confidence to share her story, she sends connections to change childhood cancer and she sends families that need us.

Recently I was connected to the Pediatric Brain Tumor Foundation to partner for their events here in New York and their special event in Boston on October 1. The Starry Night 8.5K is a family walk or run to honor the 28,000 children in the United States with pediatric brain tumors and remember the ones who are no longer here. This event in Boston is filled with children who are fighting right now, the ‘STARS’ of the night. Madeline will be a Star, we were invited to set up a table and share Madeline, her story beyond cancer- Madeline. I am excited, I can’t wait for October 1. I miss Madeline so much, but sharing her and bringing her along on adventures and talking about her keep her right here with me. I know she is proud that her story not only helps families right now with needs and memories, but it helps create the change that is needed in research and funding. Someday… this is going to change.

The Pediatric Brain Tumor Foundation is the largest nonprofit funder of childhood brain tumor research. They help fund the studies that are going to change this for many kids and families in the future. The Starry Night event we will have special ‘Starry Night’ Maddie’s Elephants to sell and grow the herd. I have been gifted an opportunity to speak at the event, to share Madeline and our journey. I know it will be hard to write and share in the presence of so many families fighting now or missing their lovely. I hope to deliver Madeline’s story and our journey and hope right alongside the struggle and hard that the words “Your child has DIPG” has brought into life. In one moment our world was broken and changed… and we are now forever aware of childhood cancer and brain tumors.

Starry Night will be night to connect and share and celebrate and miss and thank and remember my daughter, kiddos fighting now and the ones who are gone. I am beyond honored that we have this opportunity to use our voice and mission, our message and knowledge in this partnership. I get to show off my lovely and try hard to change things, partnered with many others working hard to change cancer all the way. I will get to stand and speak to many who wish and pray and work for a day when a parent doesn’t hear the words “your child has cancer”…

I am excited to see runners and feel the energy, to stand and share, to feel my missing in a pool full of amazing people who understand it. I wish my daughter had a longer book to write, one that didn’t include killer cells growing in her brainstem, but this is our story. I will carry the energy from that crowd, those runners, the STARS and the experience along with the knowledge that my Little Madeline is changing BIG things, always has and always will.

Please follow this journey- with Maddie’s Mark Foundation and the Pediatric Brain Tumor Foundation… on this page and through Facebook. Send prayers and energy for big change… if you can come run, enjoy the night or donate.

 

❤ I love you Madeline Elizabeth Musto, know you are changing the world in big and little ways…

http://www.curethekids.org

http://www.curethekids.org/events/starry-night/about.html

 

Darn Good Folks…

twill

Cheers to the good ones, this world is quite full of them. I guess I am not doing a traditional cheers, I am cleansing, but I mean it the with the same BOOM. These past weeks have been busy, I think it’s part of spring and life and baseball. I have been noting some of the best ‘good ones’ lately. I think I needed to be reminded after a crazy winter with a parent issue and bullying situation. I think I needed to see the lightness and love from strangers and old friends.

We had our monthly Maddie’s Mark meeting last week, and I hosted. I got my yard ready and made up some snacks and enjoyed my team. I set up a meeting before the meeting, to finish another meet up that had been rescheduled several times. I finally received the blankets from Twill that were donated for Maddie’s Mark. There was a mix up in the meeting time and date, so the only one who came was the Twill summer intern. We got talking and hanging out, she was great. Although we were lacking one, we chatted about goals and life. She told me she lost her brother and I asked how here mom is… she said strong. It was a little reminder my girls will get to be awesome adults who never forget their sister. She got some pictures and I chalked it up to a great meeting.

So the Maddie’s Mark meeting was fresh and good, good food, nice sunset and awesome company. We welcomed some volunteers that gift us much time and energy, discussing plans with excitement and goals. I made my to do list for the next few days and we made it to Thursday. I headed up to New Horizons to meet Jason and his team and thank him for the support. I walked in smiling. I checked out the area of trophies and plaques, they showed what this company likes to do for this community. Out came Jason and his PR guy, smiling. I shook hands and we talked, I think I was a little loud (there was computer testing going on)… so we headed back to the break room. I walked back and saw every.single.employee.smiling. It was a good welcoming feeling. We chatted about best days ever, where the blankets would go and what we do. I loved it. I thought for a moment that it was MEANT to be that I got to go up and meet Jason and his PR guy. I shared some elephants and headed out, feeling happy and surrounded, maybe connected is a good way. I love when connections are made and we can both leave content to have shared our story or mission. I am grateful…

I got home and there was mail for me… I got a package that I didn’t order. This is a favorite for me… to get a card or package as a gift just because. My friend sent a homemade card and gift… my initials and my girls on an awesome bracelet. It was a perfect and kind gift… I never know how to thank people, enough that they understand that their thought and kindness remind me that I am carried, even when I am tired. I am grateful and know that those thoughtful gifts are there to build me and my heart and soul…

This world is full of builders and carriers, best.people.ever. I know there are many things to complain about, but we can keep looking at that or look at the ones who come in and carry and love and build. I love it. We are a people of community, strong and beautiful community. I know our world is full of broken and hurting and pain and blame and shame and bad choices… but all of that rides right next to amazing and strong and kind and real and ready. I see it, I hope you do to…

A sunny good day.

Finally sitting, I know, I know… it sounds like I live on the couch. I am being honest when I say that I literally miss my couch many days. What a crazy few days. I feel like we have been on the go, nonstop, go-go-go for a few days. I am so glad it is 6:30 on Saturday night for a couple reasons- I don’t feel bad that I am not enjoying the weather AND my grass seed is busy making roots. I don’t know when I became excited for roots or grass, but I am working my butt off working, mothering and doing my house/yard work- oh yeah and creating Best Day Evers for children and families in hard places. So a little bit of excitement over ground cover is pretty good for me.

I know these days have been busy and I am pooped out… but I am also refreshed if that makes sense. I am going to shop, cook, clean and prep for the week and save some energy this week. This coming week is pretty busy too- baseball, art show, meeting, Lucy’s birthday and normal nutty. Spring in the Musto house…

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The best parts of the crazy were seeing Amelia with her favorite friend celebrating her First Communion then running back to Rotterdam to change my clothes and get my Lucy ready and marching in the parade for baseball. I think God had a plan for me to burn many extra calories yesterday. If I would have counted steps it would have hit at least 25,000. I chased Lucy in her parade, made her smile a little and know I was there. That kid makes me smile. She told me she stuck her tongue through the gap in her teeth for her baseball pictures, some parents would want a redo, I like the realness in that picture. Amelia and her fancy shoes got to enjoy lunch for Elcie’s First Communion, while Lucy and I rocked out the baseball scene. We got to the Big field and all the teams were sitting around. I got to chat with some busy politicians and catch up with Rotterdam Supervisor. I got to hug some people I haven’t seen in a long time. I got to speak and thank the community for support and involvement for all of our families… right before I had a weird boom of nervous. I haven’t been nervous or emotional while speaking in a long time. I honestly could not tell if it was nerves or emotions, I was shaky and couldn’t follow my notes. I think I covered some bases, but I felt really different then. Lucy told me my voice sounded different, she said “Mom you sounded shaky, not just crunchy”. If you know Lucy she was just being honest for me, not mean. I have a crunchy voice, I just do. I felt a lot standing there. I stood with some amazing people in this community who supported our family when Madeline was sick and passed. There were friends of Madeline who have grown. My Lucy was watching and listening. There were people who have been unkind to me and Mr. Rick. I felt surrounded and strange. It isn’t like me to be nervous or shaky or stressed to share, if you know me you know I talk, talk, talk… it’s how God made me. I spent some time thinking about what triggered the nerves… and now I am letting it go.

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I wanted to convey the pride I have for this community, the work they do to support us and to support others. We have 2 best day ever kids playing ball on those fields, that is a lot. In a field of kids and families 2 families are working through a MUCH different and harder journey right now. This area is home, just like home (watertown) for me. I am proud of the kids and parents who are stellar bucket fillers and teammates. I am honored to stand and smile and clap for those who love best day evers and families. I love the honest people most, the ones whose smiles and truth shine. I am thankful for the support and the coaches who help build our kids and teams. Lucy has an amazing coach, with a sense to humor and personality that builds kids and parents. So… I may not have gotten all that I needed out in front of the mic, I honestly can’t remember, but know Madeline is helping Lucy do what she loves.

Maddie and Maddie’s Mark are huge gifts in this… gifts I don’t always understand how I deserve. I know that she is taking care of life and the girls. I am thankful for the ones that take care of and carry us. I am thankful for the sunshine and a team of purple shirts, for sand and bases and home plate… for the good stuff she sends our way.  Tonight, I love up on my couch and cushions and Red box and the backs of my eyelids…

 

Be a mom, Share a mom… Anyway

Today was definitely a Monday, there was no mistaking it. Finally my moment came t0 on the couch and watch Fuller House… I missed my couch. I thought a lot today about yesterday, while I ran around on my 2 dentist stops, best day ever shopping and lunch with a friend. I thought about my Mother’s Day with my girls and how I felt throughout the day. We had a pretty good day, it even ended well. It felt like a nice Sunday with my girls and my Mr. Rick. I woke up tired and so not ready for it to be Monday, but that is pretty much the normal for starting a week. I definitely woke up hoping to get a gym visit in and eat clean, but that didn’t happen today. So onto some thoughts…

My girls made my Mother’s Day special all day. They started with the help of Mr. Rick coming over early and help them cook. They all brought me breakfast in bed and my lovely framed butterfly gift. We then parked it on the couch since it was morning and raining. We rewatched the new Cinderella, to educate Mr. Rick about princesses and how they definitely compare with the Disney Cars and Pixar movies. Have courage and be kind, boom life lesson. The sun started shining and we got ourselves ready to head to Indian Ladder Farms for baby animal days. Holding some week old baby animals has always been a highlight in our spring. We wandered then headed out for an adventure lunch, which accidentally turned into a stupid expensive brunch (no one serves regular food anymore on Mother’s Day). We stopped at Pine Bush Discovery Center for a bit and explored, just like we used to. I realized then that the day was like an old school Musto Chick adventure, minus Madeline and picnic lunch. We had brought Mr. Rick along for a day in the life of, from way back when…

We came home and the girls went out to play, I felt my heavy then. It is that weight that comes with missing someone so special. I sat and felt the blah and ick that goes along with thinking about the missing lady in the pictures. I can’t always pinpoint feelings, what triggers them, when they will come and how long they will last. I felt my heavy and missing for a few hours… my girls went to their grandparents for a Mother’s Day and Birthday celebration. We binge watched Netflix and enjoyed a good Malbec. It was a good lift to the heavy. The night ended with my chickens and some good TV.

I thought a lot about the amazing value of Facebook on days like Mother’s day. I loved seeing pictures of friends and family with their moms, pictures of moms when they were much younger and pictures of lovely mommas with their kiddos on Mother’s Day. It kept my eyes and brain busy for many moments yesterday, I enjoyed it. I enjoyed seeing Madeline’s friends with their mommas. I enjoyed people sharing stories about the moms they missed. I felt excitement for some ladies who will be mommas very soon. I felt my own pile but I loved looking at everyone else’s and living mine.

I don’t compare my life and gifts and hardships to others. I love the hand I have been dealt, it hurts and it glows… it’s mine and mine alone. I thought about the posts to be courteous on Facebook about those who lost their mommas, babies or other special people… Be careful what you post because it might hurt them… this idea bugs me.

Mother’s Day is a celebration. It is a day to honor moms (and special women in people’s lives). It is a day to honor a person who had a HUGE impact on your life, heart and soul. It is a day to remind her how freakin’ glad you are that she showed up and loved you anyway. Facebook opens a new way to see so much and so many thoughts and posts and pictures it is new to this generation. I look at these days and love seeing people share their moments and memories, I love seeing Madeline’s friends grow and love their mommas. Madeline isn’t here, but I am glad to see her friends grow into lovely responsible and compassionate daughters. I don’t want to ask people to feel bad that their life is good on that very day… I don’t want them to be careful not to share and hurt me. I am good. I have my own people and piles and amazing and hard. You have yours. We all have hard. We all have amazing. Share it all. I never want a person to tell me they didn’t share something because they feared it would remind me of Madeline or hurt me. I am good. I know that the world moves, it just does. I also know that we all have our hard. This year I had a friend whose momma got a lung transplant and gets to REALLY enjoy life with her grandbabies- SHARE LOVELY. I see friends I know have struggled to have a baby keep struggling, or maybe be blessed with a pregnancy that stays. I have an amazing friend who miscarried last week, right next to one who was waiting to deliver her Weston. Life is like that, full of amazing right next to hard shit. We can’t choose what we see in a public forum, we just honor what we have. It is hard sometimes to see and feel the missing of my lovely, but it never makes me want any other person’s life. We are made for our own lives, hard and heavy, light and bright. I don’t want yours and you are not made for mine.

I guess my big thought was I had a good day. I didn’t compare mine to yours, any of you. I just had mine. Mine is lacking a Madeline, yours might be full and abundant. You may have lost your mom this year, you may miss her like crazy- share her story and relish in others who are loving and celebrating their moms. It is the way it should be… loving and celebrating moms. I know, I know we should do it all the freakin’ time, like we should pray 10 times a day… but we are human and a day to remind us to REALLY honor our mom’s is a good thing. I tell myself often, love what you got, love it anyway. I never doubt that God made me for this life and this journey for me. I am missing but I am loved and blessed and almost whole. We are all carrying something heavy, let’s not make others feel shame for their bit of light. I know on a day made for mother’s some lost their mother, some long to be a mother… trust the Big Guy… He has a plan. I miss one I mother, it isn’t my job anymore. I am still here anyway… I will celebrate the mommas in this life because…

Trust His plan anyway… we all have our mountains, drowning moments, missing and heavy burdens to carry… let’s celebrate our own and honoring others…

Spring= allergies, sun and baseball (and more)…

Spring brings so many things- yard work, allergies, sunshine, rain and baseball. I think it is a favorite thing for me, parking it on a blanket watching Lucy play outfield, swing at a good pitch or yell at her for playing in the outfield sand. I love when I can see her face and I love her confidence. I love seeing my girls grow, play and change. I grew up watching my brother play lacrosse and football, my little sister played soccer- this is the first baseball of my life. I love it. I have no team other than Lucy’s I care to prance around in fan gear… I would gladly sit and watch Yankees and Red Sox’s as long as the beer was cold and the sun was out. I love watching Lucy without both…

This year is a pretty exciting year for our family and Lucy’s team. She made the Farm team and her team wears… PURPLE. Lucy’s team this year is Team Maddie’s Mark, with their cute little purple socks and tees with their last names and favorite numbers. Lucy is the only girl on the whole Farm level of baseball, and my little bubba fits right in. I love that she can rock her purple and share her sister and love the game. It is one of my favorite little add-ons to my favorite hobby…

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Maddie’s Mark is such a gift to our family and to so many others… to be able to grant best days ever to families with sick children is what most see that we do. Madeline was so much more complex though… kind and compassionate and simply complex. She loved best day ever’s, the simple kind that are made with playgrounds, nature walks, parks and adventures. The mission of Maddie’s Mark isn’t just supporting sick families, but supporting communities and parks and enrichment that remind regular families to enjoy their time and stop rushing, pushing and not spending time together. Madeline loved when we slowed down, took walks, played on the swing set and rode bikes. We want the world to enjoy time together- the best and most simple way. A few years ago the RC Little League and Town received a grant from Maddie’s Mark to improve the community baseball concession and/or field. This year the grant was gifted and last weekend the Farm level field was redone. As if that isn’t special enough that Maddie’s legacy improved Lucy’s love… that very field is named Maddie’s Field. Lucy plays on Maddie’s Field. Blessed.

Last game I watched Lucy up to bat, all confident and glad to be the first up. She hit it and ran. I watched her play baseball and throw sand in the air… it was a good night. We came home and crashed on a good note. I tried not to think about the French fries I devoured and failed in my cleanse night… and we hot the hay. I was at school the next day working and one of the mom’s that does PTO and Little League told me that Lucy was the VERY first batter on Maddie’s Field. I had no idea that my lil’ bubba was the first, and was full of energy when I found out that they rearranged the game a little for this to happen. My brain went back to the hit and I felt this deep glad that Maddie did this for Lucy. In a world where Maddie can’t do the normal with her sisters… she can’t argue or snuggle or laugh or fix things with duct tape. She can improve spaces and parks and playgrounds and fields for others, for her sisters. The energy I felt from that little bit of knowledge kept me happy all day. I love when Madeline gets to be there for her little sisters, it is my most favorite.

So… Maddie’s Mark has a team, and in true form has to do things differently. I feel the need for those teammates of Lucy to walk away from the game not only proud and having had fun playing, but knowing what Maddie’s Mark and Madeline were like. I want them to see the awesome that they can do… remind them that little things mean a lot.

 

A few weeks ago Rick and I met a friend at his family’s restaurant, Scotti’s on Union (best.eggplant.rollatini.EVER). While we were waiting to sit there were some cookies and an article on the counter. I read it and was really changed. I felt this need to share her story and support her and her business. When we set up our Maddie’s Mark team, I wanted to give our team something after as a snack/gift from us. I thought popsicles, but I am so not a good prepped lady… and knew I would be handing out a melted mess. One night my brain brought me back to this story and these cookies… and I knew I needed to share her cookies and story. I bugged her dad and viola… I picked up and delivered cookies to our Maddie’s Mark RC Little League team. They were a hit, those kiddos ate them before I could share it all. Amelia and the sibling fan club handed out packages to the team wrapped in purple ribbon. So tonight I share the story behind the cookies, the gifts from Maddie and Izzy.

(Read this article)

Sixth grader builds reputation as a skilled baker

I love connections and sharing, Madeline ensures me she loves this part all.the.time. I love that this brave and talented girl, Izzy, has taken a really hard experience that took so much from her, and she has made more. She is one of those Madeline kind of girls… what I know my daughter would be like. She has seen hard and still loves and lives and grows… she has lost much and grown anyway. I love those kind of girls…

So read what I include and help me thank and share. Izzy is one brave and creative chica. Lucy is one fast, confident and happy player… Meme is my lil me, my special gift. Help me share the good workings of God and Madeline… the bits she throws in our lives to help us get by and to help us learn. Help us be what we are, as Miss Izzy changes her own fate and future and keep becoming what her amazing and big role is.

 

 

I love you lady, you are the best Mads ever. I miss you, but love when you take care of your sisters. I will wake up missing your plan of breakfast in bed, but know you left some amazing protégés. Come bug me beauty bug, I miss you like crazy even though I will see you when I see you.